(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
    Tips for
  3. As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal “file cabinet” on MAC/MAI!  Go to it!

KateMN

Hi mimi68 was there any new information for us?

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Hello All, I just received this email from the NTMir .. thought I’d share it in case anyone is interested! Katherine

It said:
You are being asked to participate in research to help develop a clinical trial on pneumonia

NTMir is forwarding the following information on behalf of Duke University:

We are doing research to find out what patients and caregivers think about a new way for enrolling patients into a clinical trial on pneumonia. We are focusing on pneumonia that people get in the hospital or when on a machine that helps people to breathe. The research involves one face-to-face or telephone interview and two follow-up online surveys.

Patients can take part if:
•They are 18 years of age or older
•They have: •Been in the intensive care unit (ICU) or in the hospital overnight at least once in the last two years and have had a previous diagnosis of pneumonia while in the hospital, a short-term illness, a longer-term illness, physical trauma, or surgery, or are immunocompromised, OR
•Chronic lung disease (for example: chronic obstructive pulmonary disease [COPD] and cystic fibrosis)
Patients and caregivers will each receive compensation for participating in the interview. In addition, for each completed online survey, patients and caregivers will also receive compensation. If patients and caregivers complete all of the data collection events, an additional compensation will be provided at the end of the study, to thank participants for their participation.

Although we hope you will join us, participation is voluntary. There are no direct benefits from participating. Anything you say during the interview will be kept confidential, and your name will not be included in any reports, articles, or presentations about this study.

Patients can take part even if their legally-authorized representative does not. Likewise, caregivers can take part even if their loved one does not.

If you would like more details about the study, or you would like to schedule an interview, please contact the study’s research assistant, Katelyn Blanchard, at 1-877-637-1490 or via email at katelyn.blanchard@dm.duke.edu.

— The Clinical Trials Transformation Initiative at Duke University

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@justjanet
Hi Janet,
Let’s communicate on the Forum .. this is REALLY good information to share with ALL! You did SUCH a good job! Do you mind if I put it on the Forum?

I found out about googling the bios of doctors the hard way because of my husband’s health. He has leukemia .. a blood cancer .. AND I found out the hard way that we had been referred to an Oncologist who was a Specialist in COLON CANCER!! I was SO angry!! Did not even discover it until we were spending winters in a warmer climate AND I then realized I needed to do MORE “Due Diligence” and started my googling doctor bios .. and I found an Oncologist who SPECIALIZED in leukemia! Who then put my husband on a newly FDA approved chemotherapy .. my husband is alive today due to that man as far as I am concerned!

“Due Diligence” does the job as you have well found out! Good for you! I am so happy for you that you found the very best Center for Bronchiectasis Care and they treat NTM .. PLUS it is covered by your insurance! Sorry .. I do NOT consider it “luck” for you! You absolutely deserve this! You have worked so hard with your Plan A .. Plan B .. Plan C. You’ve done such a good job with your research and planning!

Now I would suggest you gather up ALL the records you can find .. doctor office notes .. Xray .. MRI .. Ultra sounds etc. ANYTHING that you can think of .. get it organized. A lot of doctor offices and hospitals will put you off .. my solution is to get a date and tell them I WILL pick it up personally!! That way I can sign whatever legal document necessary PLUS it gives them a deadline and I know I will have them for the appointment. THEN .. do NOT give up your copies. Make these copies your PERSONAL copies for future reference as needed. Make sure any NEW doctor makes COPIES of YOUR copies! I know in my home state doctor offices are only legally required to keep medical records for seven years. So it is important with our diseases to have our own records to show the disease history and progression. Then write down a detailed list of questions for your new doctor. If you google it you will find many doctor question lists. Personally I cut and paste many of the various question lists and came up with my own.

After that? Just let go! Know that you need to “Put your energy into what you can control .. and let go of what you can’t control!” You have already put your energy into doing your “Due Diligence” .. now you just need to be serene about the outcome .. you can’t control the outcome. Just keep us posted here on the Forum .. know we are here for you! Sending you a hug! Katherine

REPLY
@katemn

@justjanet
Hi Janet,
Let’s communicate on the Forum .. this is REALLY good information to share with ALL! You did SUCH a good job! Do you mind if I put it on the Forum?

I found out about googling the bios of doctors the hard way because of my husband’s health. He has leukemia .. a blood cancer .. AND I found out the hard way that we had been referred to an Oncologist who was a Specialist in COLON CANCER!! I was SO angry!! Did not even discover it until we were spending winters in a warmer climate AND I then realized I needed to do MORE “Due Diligence” and started my googling doctor bios .. and I found an Oncologist who SPECIALIZED in leukemia! Who then put my husband on a newly FDA approved chemotherapy .. my husband is alive today due to that man as far as I am concerned!

“Due Diligence” does the job as you have well found out! Good for you! I am so happy for you that you found the very best Center for Bronchiectasis Care and they treat NTM .. PLUS it is covered by your insurance! Sorry .. I do NOT consider it “luck” for you! You absolutely deserve this! You have worked so hard with your Plan A .. Plan B .. Plan C. You’ve done such a good job with your research and planning!

Now I would suggest you gather up ALL the records you can find .. doctor office notes .. Xray .. MRI .. Ultra sounds etc. ANYTHING that you can think of .. get it organized. A lot of doctor offices and hospitals will put you off .. my solution is to get a date and tell them I WILL pick it up personally!! That way I can sign whatever legal document necessary PLUS it gives them a deadline and I know I will have them for the appointment. THEN .. do NOT give up your copies. Make these copies your PERSONAL copies for future reference as needed. Make sure any NEW doctor makes COPIES of YOUR copies! I know in my home state doctor offices are only legally required to keep medical records for seven years. So it is important with our diseases to have our own records to show the disease history and progression. Then write down a detailed list of questions for your new doctor. If you google it you will find many doctor question lists. Personally I cut and paste many of the various question lists and came up with my own.

After that? Just let go! Know that you need to “Put your energy into what you can control .. and let go of what you can’t control!” You have already put your energy into doing your “Due Diligence” .. now you just need to be serene about the outcome .. you can’t control the outcome. Just keep us posted here on the Forum .. know we are here for you! Sending you a hug! Katherine

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Sorry Katherine! Just hit reply and thought I was on the forum then or not paying enough attention. Not the brightest bulb on the planet. 🙂 Thanks for all the tips. I will definitely use them.
Have a great day-
Janet

REPLY
@heathert

Hi mimi68 was there any new information for us?

Jump to this post

Hi Heathert, Since I am new to this site and also this blog, I felt I got some valuable information to discuss with my pulmonologist. They talked about symptoms, treatment, sources from which the infection comes, which some of this is repeat of what I’ve already read. I was mostly interested in the testing procedures for this disease as my doctor is rather set on treating it before we are even certain that I have it. They also talked about ways to prevent getting the infection. I feel that if you have access to SiriusXM, Doctor channel 110, it will be worth your while to listen to it. The part about NTM is about an hour long.

REPLY
@katemn

@justjanet
Hi Janet,
Let’s communicate on the Forum .. this is REALLY good information to share with ALL! You did SUCH a good job! Do you mind if I put it on the Forum?

I found out about googling the bios of doctors the hard way because of my husband’s health. He has leukemia .. a blood cancer .. AND I found out the hard way that we had been referred to an Oncologist who was a Specialist in COLON CANCER!! I was SO angry!! Did not even discover it until we were spending winters in a warmer climate AND I then realized I needed to do MORE “Due Diligence” and started my googling doctor bios .. and I found an Oncologist who SPECIALIZED in leukemia! Who then put my husband on a newly FDA approved chemotherapy .. my husband is alive today due to that man as far as I am concerned!

“Due Diligence” does the job as you have well found out! Good for you! I am so happy for you that you found the very best Center for Bronchiectasis Care and they treat NTM .. PLUS it is covered by your insurance! Sorry .. I do NOT consider it “luck” for you! You absolutely deserve this! You have worked so hard with your Plan A .. Plan B .. Plan C. You’ve done such a good job with your research and planning!

Now I would suggest you gather up ALL the records you can find .. doctor office notes .. Xray .. MRI .. Ultra sounds etc. ANYTHING that you can think of .. get it organized. A lot of doctor offices and hospitals will put you off .. my solution is to get a date and tell them I WILL pick it up personally!! That way I can sign whatever legal document necessary PLUS it gives them a deadline and I know I will have them for the appointment. THEN .. do NOT give up your copies. Make these copies your PERSONAL copies for future reference as needed. Make sure any NEW doctor makes COPIES of YOUR copies! I know in my home state doctor offices are only legally required to keep medical records for seven years. So it is important with our diseases to have our own records to show the disease history and progression. Then write down a detailed list of questions for your new doctor. If you google it you will find many doctor question lists. Personally I cut and paste many of the various question lists and came up with my own.

After that? Just let go! Know that you need to “Put your energy into what you can control .. and let go of what you can’t control!” You have already put your energy into doing your “Due Diligence” .. now you just need to be serene about the outcome .. you can’t control the outcome. Just keep us posted here on the Forum .. know we are here for you! Sending you a hug! Katherine

Jump to this post

Janet, keep us posted! You are doing such a great job! Sending you a Hug! Katherine

REPLY
@heathert

Hi mimi68 was there any new information for us?

Jump to this post

Hello Mimi,
If anyone hears where we can get a written transcript I’d really be interested in this! I am one of those “Visual Learners” so that would be most helpful for me! Best to all! Katherine

REPLY

Hello All, just a heads up .. I will be on a trip from July 11 and return July 25. I would ask you to keep an eye out for any new person posting and give them any help and support you possibly can .. AND of course continue to give each other the wonderful help and support you already do! Sending you all a Big Hug .. and don’t forget .. I’ll be here until July 11!

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@colleenyoung

Re Clinical trials in MAC, I found this one that is being conducted by Principal Investigator Timothy Aksamit, M.D. at Mayo Clinic:
Study to Evaluate Efficacy of LAI When Added to Multi-drug Regimen Compared to Multi-drug Regimen Alone
http://www.mayo.edu/research/clinical-trials/cls-20147219
Upon further investigation, I discovered that the trial is being done in 86 locations in 13 different countries. If you`re interested in participating, there may be a center near you that is involved. https://clinicaltrials.gov/ct2/show/study/NCT02344004?show_locs=Y#locn

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Sorry to hear that Paula but great that your old MAC has deminished. Have you been on the same 3 antibiotics for the last 8 years or have they been changed? Hope your doc can gets this sorted asap for you.

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@katemn

Hello All, I am going to say something that may not go over well .. BUT I going to say it anyway.

In the beginning of my disease I began reading at the American Lung Assn .. on NTM about MAI/MAC .. googling .. going to a local MAI/MAC Support Group. TRYING to do my “Due Diligence” .. finding out everything I could about my disease .. and those who have been on this Forum for very long KNOW I am BIG on educating yourself and DOING your “Due Diligence”! But here is my point .. I began to find myself patterning myself after people I was coming into contact with .. I was ‘BECOMING MY DISEASE”! It became my FOCUS in life.

I had to have a “Coming to Jesus” moment with myself .. I really had to stop and really think about what journey I wanted to take with this disease.

I realized that I wanted this disease to JUST BE A PART of who I am .. I DID NOT want this disease to be WHO I was! I hope this makes sense to you. I’m just saying .. to educate yourselves .. but then LIVE your life best you can .. have whatever fun you can. Don’t allow the disease to define you. Frankly I do my very best to just ignore it unless it is staring my in the face with whatever limitation I have at that given moment! If it isn’t staring me In the face .. it doesn’t exist .. denial has worked wonders since 2007 and I’ve live a wonderful life since then. I know that sounds goofy but I just feel happiness is a choice I make every single morning when I get up .. and I make that choice. These various illnesses do NOT define who and what I am going to be today! Hope that makes some sense! Sending hugs to all! Kathering

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I was diagnosed with MAC on july 5 2016. I dont feel bad at all but kinda freaked out regarding the side effects of the meds. Cried and cried until spmeone prayed for me and i know i have to think positive to be healed…

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@katemn

Hello All, I am going to say something that may not go over well .. BUT I going to say it anyway.

In the beginning of my disease I began reading at the American Lung Assn .. on NTM about MAI/MAC .. googling .. going to a local MAI/MAC Support Group. TRYING to do my “Due Diligence” .. finding out everything I could about my disease .. and those who have been on this Forum for very long KNOW I am BIG on educating yourself and DOING your “Due Diligence”! But here is my point .. I began to find myself patterning myself after people I was coming into contact with .. I was ‘BECOMING MY DISEASE”! It became my FOCUS in life.

I had to have a “Coming to Jesus” moment with myself .. I really had to stop and really think about what journey I wanted to take with this disease.

I realized that I wanted this disease to JUST BE A PART of who I am .. I DID NOT want this disease to be WHO I was! I hope this makes sense to you. I’m just saying .. to educate yourselves .. but then LIVE your life best you can .. have whatever fun you can. Don’t allow the disease to define you. Frankly I do my very best to just ignore it unless it is staring my in the face with whatever limitation I have at that given moment! If it isn’t staring me In the face .. it doesn’t exist .. denial has worked wonders since 2007 and I’ve live a wonderful life since then. I know that sounds goofy but I just feel happiness is a choice I make every single morning when I get up .. and I make that choice. These various illnesses do NOT define who and what I am going to be today! Hope that makes some sense! Sending hugs to all! Kathering

Jump to this post

Welcome Sophie, I am glad you have found our Forum .. I feel confident you will find a LOT of good information if you can find the time to read through the posts going back to the beginning. Plus you will find many kind supportive people who are here walking the same journey you are on .. we are all in this together. Personally I have been off the antibiotics since May 2014 . . so as you said .. THINK POSITIVE! You have a great attitude .. you just keep it up and you will be just fine! Sending you a hug! Katherine

REPLY
@katemn

Hello All, I am going to say something that may not go over well .. BUT I going to say it anyway.

In the beginning of my disease I began reading at the American Lung Assn .. on NTM about MAI/MAC .. googling .. going to a local MAI/MAC Support Group. TRYING to do my “Due Diligence” .. finding out everything I could about my disease .. and those who have been on this Forum for very long KNOW I am BIG on educating yourself and DOING your “Due Diligence”! But here is my point .. I began to find myself patterning myself after people I was coming into contact with .. I was ‘BECOMING MY DISEASE”! It became my FOCUS in life.

I had to have a “Coming to Jesus” moment with myself .. I really had to stop and really think about what journey I wanted to take with this disease.

I realized that I wanted this disease to JUST BE A PART of who I am .. I DID NOT want this disease to be WHO I was! I hope this makes sense to you. I’m just saying .. to educate yourselves .. but then LIVE your life best you can .. have whatever fun you can. Don’t allow the disease to define you. Frankly I do my very best to just ignore it unless it is staring my in the face with whatever limitation I have at that given moment! If it isn’t staring me In the face .. it doesn’t exist .. denial has worked wonders since 2007 and I’ve live a wonderful life since then. I know that sounds goofy but I just feel happiness is a choice I make every single morning when I get up .. and I make that choice. These various illnesses do NOT define who and what I am going to be today! Hope that makes some sense! Sending hugs to all! Kathering

Jump to this post

Hi Sophie, You are right to think positive! I was diagnosed with MAC and Bronchiectasis in beginning of March and didn’t see a pulmonologist until mid-April. I also feel fine at this point so I probably won’t be starting treatment at this time but I will discuss it with Doctors that specialize in this in August when I go to a clinic here that treats just Bronchiectasis and also MAC or NTM. I think the most important thing you can do is research. Its scary at first but focus on the success stories – there are many of those too. And by success, I mean learning to live with this disease, to accommodate it, to work around it. And find doctors in your area that know a lot about this. You need an infectious disease specialist along with your pulmonary doctor. What state are you in? Katherine is absolutely right – read all the past posts on this board. You will learn so much. You are not alone in this! Hang in there. Janet

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